Wednesday, March 13, 2013

Adventure #19: Being Brave

I wrote this personal essay for my Creative Writing course last March (turned it in a year ago yesterday, actually). I did NOT want to write it, but it burned to be written (I even wrote an alternate essay about something else, but all my peers preferred this one, so I stuck with it). Then, I felt like I should post it on here but didn't want to. Now, a year has passed, and through it all, I have still had that impression to post it, so I finally am. So YOU BETTER READ IT!

*********************************************************

I never really thought I was different. Getting my blood drawn was routine, and a finger prick or a needle in my arm was never anything to be afraid of, though the kids in my fourth grade class often discussed horror stories of getting even a shot. But, knowing nothing else, children accept the circumstances they are given, as I did with getting my blood counts. I do not even remember if I knew for what reason my blood was periodically taken.

DavĂ­d (brother, 12), Me (9), Ilene (sister, 22), and Ashley (niece, 19 months)
in February 1998 at Natural Bridge Wildlife Ranch near San Antonio, Texas
Eventually I would learn I was a patient of the lifelong disease Diamond Blackfan Anemia (named after the doctors who discovered it; not intentionally meant to sound dark)—lifelong because it is a genetic mutation and there is no cure. Only 600 to 700 people in the world have this disease, which will cause the bone marrow to produce no or little amounts of red blood cells. It has been known as a crib death, since the ultimate result of a waning red cell count is cardiac arrest and death. Patients are most commonly treated with blood transfusions and/or steroids, a miracle drug that stimulates the bone marrow to produce red cells, though how or why it does this is unknown. The nature of the disease is often unpredictable. On occasion, a patient’s anemia may go into remission that they may live healthily, free of transfusions and steroids.

Apparently, I was exceptional, though. When I returned to Santa Rosa Children’s Hospital in San Antonio for the first time in four years, having recently moved back to the San Antonio area, everyone knew me, even those who were new since I had last been there. They knew my story. I was one of those who lived, treatment free, on my own, with the blood disorder in remission. I had not been on steroids or had a blood transfusion for years and, thereby, was taller than a twelve year old girl also with Diamond Blackfan that was at Doctor Briton’s office the same day as me. This remission is what made me known and a commonly discussed case among the Children’s Cancer and Blood Disorders Center. After all, I had just spent three years in Saudi Arabia, in which we had needed special permission for me to live there, where emergency medical attention would be even more difficult to come by than it already was. Many within the hospital department and those who knew me when I was very little found me an inspiration and would reverently express that.

As I came to understand these things, I took pride in it. I commonly prided in my facts. That is what I was known for—the one who traveled the world and always knew the right answers in my classes. I was never gifted with many abilities, as athletics or other talents. I played piano, because I had had lessons. Besides that, I did not do very much but was known for knowing stuff. If I were to get any attention or to be known by anyone, I would have to rely on the facts about me and the facts I knew.

Also, I was not very good-looking, I had determined. What I saw in the mirror and in pictures was unimpressive, unlike some of the other boys my age. There were often girls crushing on them. I had never heard of any girls crushing on me or of any other validation that I may be good-looking, so I resorted to believing that I was ugly and would not grow to be handsome like my older brothers. The only physical definition I had was being tiny, fairly short and thin. I was born small but also received the stunted growth that came from steroid and blood transfusion treatments. I enjoyed being small and thought it was ideal, though I often perceived disfavor from others about my size, but still, they would know me for my tininess. I figured that it at least got me some attention.

***

With my seventh grade awards in May 2001, Age 12
Over three years later one Sunday, I sat in my family’s hot minivan passenger seat with the door open, waiting for my family to come out of the church building, so we could go home. Celia Blaine [names changed] came out with Paul Abrey. He carried her baby to his car, but she approached me. She was a tall woman, very thin. I had always thought she looked like a model and had somewhat of a crush on this married woman who was more than twice my age, but I often wished for her sweet attention, as well as other people’s attention or praise—a sign of value from them.

I knew I would not get very good attention from my appearance. The older I got the scrappier or homelier I looked. I perceived I needed to show off my thin frame by moving lightly and feathery, and that, in turn, led me to feel insignificant, though I was only trying to give that quality notice.

Now, I was doped on steroids, and my body had honked up in size. This body bore no comfort, while it faced the effects of the steroid: water retention, weight gain, change in hair and eye color, stunted growth, stretch marks, and many other side effects of the drug. At times I could not operate. For instance, gas would be trapped so hard inside me, my chest would feel like it would explode; or, my indigestion so great my insides felt like they would implode. My body did not feel like my own.

My eating tripled, because I always felt hungry. I never reached satiety. Before I understood this effect of the steroid, the only reason I would stop eating was because I could not fit another parcel of food inside of me.

My personality changed, too. I was irritable about every thing that was even slightly out of place. This increase in stress made sleeping difficult and gave me headaches and migraines.

I did not recognize myself and was uncomfortable with the drastic changes in my bodily function and appearance. Others did not recognize me either. Some people would not look at me anymore. Had they stopped seeing me? Few would talk to me previously, and now even fewer did. I became the smart kid who suddenly got FAT in a month. Some would unsympathetically tease me, particularly about my abnormally chubby cheeks. But, after all, junior high is not when a lot of people are the most understanding. Still, as a preteen often contemplating the point of anything in life, I found these interactions not the least bit encouraging.

As Celia approached me, I sat up, expecting her to give me a message for my mother, who, at the time, was the leader of the women’s organization for our church ward. I was used to being a messenger regarding her business.

She hugged me. “You are so brave,” she said quietly and left.

***

As I look back on that day with Celia, she amazes me. I remember her as a quiet person. It did not strike me at that age, but now as an adult, I sense irony in her message, in that she probably braved to hug me and to say those words.

November 2012, Age 24
Still, that was one of the kindest things that anyone did for me during that time. I did not feel brave, but it made me realize I could be, more than I was being. I did not feel as alone, and I felt like there were people watching out for me. I could brave through my condition, despite how I felt about myself or how I felt others saw me. If anything, I could brave through my condition for others.

Now, ten and a half years since I received steroid treatment, eleven years since I received a blood transfusion, I walk across a university campus to meet a friend to discuss a personal essay I wrote for one of my classes. I did not wish to write about my topic, but it burned within me to be written. It is something that has usually made my body involuntarily shake when I discuss it. I rarely bring it up, unless I feel it is appropriate, but I never shy away from it when it is brought up.

That essay led me to investigate my blood disorder further. As I have scrolled through websites and Facebook pages and groups, I find pictures of patients posted by loved ones. They are all seeking hope. Many of those pictured are no longer living. Some only lived to the age of four, others eighteen. It is not easy to face.

In the past, I investigated these sites but eventually banned myself from further viewing, because my body would shake and they would lead to tears from recognizing the result of fellow patients and, perhaps, from a silent fear of the same for myself.

There was even a discussion board of parents with an infected child in my area wishing to reach out to others that may be experiencing the same disease. Others responded, although they were not near these parents. I did not participate. I did not want to face this with them, though I could have met them in person, as was their hope. Was I being selfish? I could hardly face looking at pictures of other patients, let alone comfortably recount my own story. Perhaps, it would have been good to meet them, but I was not brave enough.

Now, as I see those who are struggling more than I have had to and those who have passed on, I know I have been given this time. I have been granted it—not that I am more deserving than others. I sometimes wonder why I am given this. But I have it. I must use it. It should not be spent moping about what I feel I lack or in dispute with or fear of others. This is life. Every breath is a gift. I have the opportunity to live. I am here.

I attend a university where people are kind to me. My peers know me for my kindness and my humor. They enjoy my personality and smile when they see me, as I smile back.

May 2011, Age 22
Often, I am told how good-looking I am. “Cute” is the most common word used. Anytime I perform a scene for my film acting class, my professor raves about how good I look on film.

And in this, I am grateful. Being considered good-looking can be especially beneficial in landing a job in my line of work as an actor, but beyond that and getting ready for my day, I hardly think about appearance, though I assume value in tidiness, as I have all my life. I find more to life than how I look, physically and in action.

I love people knowing my personality and find great reward in that. Rarely do I discuss facts about me, having felt like a museum exhibit in the past—something to see, learn about, and then move on from. Very few people know of my international birth or world travels, and even fewer know about my blood disorder. I desire them to be honest and unbiased with me and treat me as they would anyone else, without affected favor, respect, or disregard based on these facets of me. It is not that I hide these things about me. I am open to speak of them when appropriate. I prefer people to know the current operation of me and I them.

We all have our pasts, but life is now, and we do not know how long we will have it. Now is what we are given, even if it requires being brave. 

No comments:

Post a Comment